Tube Weaning: Day 12

Auggie continues to eat and eat and eat.  He is taking more and more calories by eating his purees, but he is still not drinking very much. However, today he did start drinking neocate splash from his Mr. Juice Bear.  He is getting a little bit of pedialyte tonight and then I think it's time to say goodbye to his tube!!!  It has been an amazing journey....more news to come soon.

Tube Weaning: Day 11

What a different kid we saw today!!  There were no periods of gloominess.  I made sure to feed him every 2 hours and he beat his record. He had lamb for the first time today, plenty of avocado and he consumed almost as many calories by mouth as he has been getting via tube before.  He also beat his old drinking record, taking 2.5 oz. in 10 minutes.  We're seeing a steady increase in his consumption now every day. The key for him now is fluids and protein.  We have to figure out how to get him to drink a protein rich beverage.  Our options are limited due to milk protein allergies but we will try neocate splash tomorrow and if that doesn't work we might have to experiment with soy milk.  Tonight he gets some pedialyte but no formula. Looking forward to tomorrow.  The house is a mess as I spend most of my time preparing food and feeding and washing Auggie. 

Tube Weaning: Day 10

What a day!!!  Today Auggie beat his record from yesterday and had 23 tablespoons of purees throughout the day, but the most amazing thing was when he guzzled 2 oz. of rice cereal drink in 7 minutes!  He only had 20% of his usual calories overnight and then pedialtye to hydrate him.  His hunger slowly built up during the day and breakfast was his smallest meal.  He never got too cranky or gloomy.  Tonight I'm giving him just 70ml of formula and then about 300ml of pedialtye.  Tomorrow we're working on his drinking skills and trying some neocate splash.  The doctor says he doesn't need to drink a "milk" as long as he gets enough protein and calcium from the foods he eats - that's great news, because I don't know what he would be able to drink.  We discovered coconut "yogurt" today - it's packed with calories at 30 per oz and Auggie seems to love it.  Time to get some sleep.....

Tube Weaning: Day 9

Major breakthrough!!!  Auggie devoured half an avocado this afternoon along with several tablespoons of peas, cauliflower and sweet potatoes.  He was glum and distant when he woke up from his afternoon nap and when his speech therapist first came over, but once he started eating he quickly perked up.  We are so proud of the little guy, now we just need to continue with the same volume of solids and get him to take more fluids.  He took 70ml of his rice cereal drink today and several small sips of water and diluted white grape juice.  We're cutting his calories again tonight - he'll get just 20% of his usual amount...we're hopeful that we'll have another good day tomorrow.

Tube Weaning: Day 8

We seem to be on the verge of a breakthrough but it's frustrating for everyone.  Auggie seemed anxious, hungry and a bit frantic today when he was presented with food.  He insisted on grabbing a tangerine from me and then bit into it really hard and made a grunting sound (very caveman like).  He almost took a big chunk out of it.  Again, he was not too interested in taking a spoon from me but he fed himself a few times, ate off my finger and sucked food from his nuk brush.  He took slightly less today from his bottle but more solids than yesterday.  Another new development today was that he started taking small sips of water from his nuby sippy cup.  His calories via tube were reduced by 60% overnight. I gave him some pedialyte during the day to calm him.  He's having good pee diapers so he's staying hydrated even though I'm only giving him 400ml of fluids via his tube.  His speech therapist comes tomorrow so I hope he makes some progress.  He has already lost about 3.5% of his starting weight (we're allowing a weight drop of 10% before we change course). 

Tube Weaning: Day 7

Day 7 was the best yet.  Auggie continues to drink his rice cereal drink; at times just small sips but other times he pulls the bottle towards him and takes big gulps.  He had a total of 90ml today - I  was very impressed.  His intake of solids has also increased - took about 40ml of sweet potatoes, peas and rice cereal mixed with pureed prunes.  He gagged a bit on a baby mum-mum but recovered pretty quickly.  I've been too worried about sabotaging his eating experience with another vomiting episode that I've tried to stay away from giving him any pieces of anything.  With his limited eating/drinking experience he is still at the level of a 4 month old so I guess we just need to take it slow with the textures. His mood has been pretty good despite the caloric reduction although he does tend to get pretty cranky and needier in the evenings.  All in all though, he's been a real trouper.  Tonight he gets just 40% of his normal calories we'll see if he eats more tomorrow as a result.

Tube Weaning: Day 6

He took 60ml of liquid rice cereal from a bottle today!!!! Yay, he can do it.  The best thing is that he took 30ml in 5 minutes and the remainder in several sessions during the day.  He only opened his mouth once for a spoon of puree but even that's progress. I am however feeling the pressure of this wean starting to build and my body is starting to shut down from the constant feeding, preping, cooking and cleaning in addition to taking care of a very needy 4 year old. Tomorrow is another 50% day and I hope that my sinus headache and sore throat does not turn into a full blown cold.  It would be devastating for Auggie to get sick at this point and we would probably have to change plans.  Lots of hand washing for me.  Cross your fingers for us!!